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Cited by 48Family and Disability Support ResearchAutism Spectrum Disorder ResearchChild Nutrition and Feeding Issues

Maternal experience raising girls with autism spectrum disorder: a qualitative study

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Navot, N., Jorgenson, A. G., Webb, S. J.·2017·Child: Care, Health and Development
DOI 10.1111/cch.12470PMC PMC5993544
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Abstract

Background: A growing line of research has sought to characterize the different presentations of autism spectrum disorder (ASD) among boys and girls. Much less is known about maternal experience and mother–child relationship in children with ASD based on child gender. The present qualitative study aimed to investigate the mother–daughter relationship from the perspective of mothers who are raising girls with ASD with normal intelligence and functional verbal communication. Methods: Eleven in‐depth interviews were conducted with mothers of girls with ASD, ages 10–19 years. Data were analysed in an interactive process commonly used in naturalistic inquiry. Results provide insight into the unique maternal experience of raising a daughter with ASD. Results: Mothers reported a sense of exclusion from the neurotypical population and male‐dominant ASD population and transformation in relationship. Themes identified were skepticism and delayed diagnosis, disbelief from others, lack of information about girls with ASD, higher social demands in adolescence, puberty challenges around hygiene, disappointment about physical appearance, vulnerability in relationships and worries about future functioning. The mother–daughter relationship started with an early expectation of a close and intimate relationship that then underwent a transformation, which challenged maternal competence, reshaped expectations and created a different bond between mother and daughter. Conclusions: The findings in this qualitative study highlight the impact of gender on the maternal experience of raising a daughter with ASD and contribute to a better understanding of the needs of both mothers and daughters. These results can help providers support the mother–daughter dyad by recognizing gender‐specific challenges.

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  • Lack of information is a barrier for the diagnosis of females.

    “One study indicated that a lack of information was a barrier for the diagnosis of females (Navot et al. 2017).”

    From Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review (2021) · cites this paper as Navot et al. 2017

    In the Results (page not available), mothers report limited information about girls with ASD, while the separate account of delayed diagnosis describes paediatricians’ skepticism. The Discussion (page not available) links paediatricians’ failure to recognize ASD signs to later diagnostic referral, but links the lack of scientific information chiefly to mothers’ difficulty understanding their daughters, not explicitly to a diagnostic barrier. (LLM, conf=0.82)

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  • Lack of relevant and tailored information may make parents less inclined to seek diagnosis for their daughters.

    “Lack of information was seen as detrimental to the diagnostic process, as without relevant and tailored information, parents may not be so inclined to seek diagnosis for their daughters.”

    From Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review (2021) · cites this paper as Navot et al. 2017

    The Results (‘Lack of information’; page not provided) report that mothers had few opportunities to learn about girls with ASD, affecting their understanding of their daughters’ needs. The Results (‘Skepticism and delayed diagnosis’) and Discussion attribute delayed evaluation to paediatricians’ skepticism or failure to recognize ASD signs; they do not say that a lack of tailored information made parents less inclined to seek diagnosis. (LLM, conf=0.81)

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  • Parents expressed concern that they failed to recognise symptoms of ASD in their daughters.

    “Navot et al. (2017) in their study of 11 mother-daughter dyads found that parents expressed concern that they failed to recognise symptoms of ASD in their daughters”

    From Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review (2021) · cites this paper as Navot et al. 2017

    The Results sections report that mothers felt guilt about delayed diagnosis and that limited information made it harder to understand their daughters’ needs. They do not say the mothers failed to recognise symptoms: 9 of 11 raised early concerns with a paediatrician and encountered skepticism. The Discussion attributes a lack of recognition of ASD red flags to paediatricians, not parents. Page numbers are unavailable in our copy. (LLM, conf=0.84)

    Experimental — accuracy not yet measured

  • Perceptions of others are a barrier to female ASD diagnosis, identified in three qualitative studies.

    “Three qualitative studies identified the perceptions of others to be a barrier to female ASD diagnosis, based on interviews conducted with adolescent girls with ASD and their mothers (Cook et al. 2018; Cridland et al. 2014; Navot et al. 2017).”

    From Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review (2021) · cites this paper as Navot et al. 2017

    The Results section reports that paediatricians were skeptical of mothers’ early concerns, delaying evaluation, and that others doubted diagnoses partly because of expectations about girls. This supports perceptions of others as a barrier to diagnosis. However, the Methods > Procedure section says this study interviewed mothers, not the adolescent girls themselves. (LLM, conf=0.87)

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  • Parental concerns are a barrier to diagnosis for females, mentioned in five papers.

    “Five papers mentioned parental concerns as barriers to diagnosis for females (Duvekot et al. 2017; Little et al. 2017; Navot et al. 2017; Ramsey et al. 2018; Watson 2014).”

    From Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review (2021) · cites this paper as Navot et al. 2017

    In Results (‘Skepticism and delayed diagnosis’; page unavailable), mothers reported raising early concerns with paediatricians who were skeptical, delaying evaluation. The Discussion attributes later referral to paediatricians’ failure to recognize ASD red flags. The paper supports a barrier involving the dismissal of parental concerns, but not the claim that parental concerns themselves were a barrier. (LLM, conf=0.85)

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Cites

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Research works printed but not linked: 3

  1. Hirch M 1989 Feminist discourse/maternal discourse The Mother/Daughter Plot: Narrative, Psychoanalysis, Feminist theorizing about Motherhood 162 201 Indiana University Press Bloomington and Indianapolis
  2. La Sorsa VA Fodor G 1990 Adolescent daughter/midlife mother dyad: a new look at separation Psychology of Women Quarterly 14 593 606
  3. Lawler S 2000 Mothering the self: mothers, daughters, subjects 34 56 Routledge London and New York

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Authors
Navot, N., Jorgenson, A. G., & Webb, S. J.
Affiliations
University of Washington (US)
Corresponding author
  • Navot, N.
  • Webb, S. J.
ORCID
Venue
Child: Care, Health and Development
Publisher
Wiley
Published
2017-05-02
Volume
43
Issue
4
Pages
536-545
ISSN
  • 0305-1862 (ISSN-L)
  • 1365-2214
DOI
10.1111/cch.12470
PMC
PMC5993544
OpenAlex
W2611468019
Cited by
48
References
64
Citations by year
2026: 3 · 2025: 13 · 2024: 7 · 2023: 7 · 2022: 5 · 2021: 2 · 2020: 4 · 2019: 6 · 2018: 1
FWCI
3.72
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Child Care Health and Development (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
Funders
Crown Family Foundation (Navot)
Topics
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
Keywords
autism spectrum disorder, autistic girls, mother-daughter relationships, maternal experience, gender differences in autism, mother-daughter dyads, delayed diagnosis, puberty, maternal competence
MeSH terms
Autism Spectrum Disorder, Adaptation, Psychological, Adolescent, Adult, Anxiety, Child, Emotions, Female, Humans, Hygiene, Interpersonal Relations, Mother-Child Relations, Mothers, Nuclear Family, Sexual Maturation, Social Adjustment, Parenting, Qualitative Research, Delayed Diagnosis, Social Stigma

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